Wednesday, October 7, 2009

Reagan did the same thing last night as the night before. Apparently 4am is the new 7am! Again we laid her in bed with us and again I had a really hard time sleeping with her beside me. She's very restless and kept poking me in the eye with her sharp little fingernails! This morning's PT session went loads better than the aquatic therapy yesterday. She and her therapist actually spent the entire time on the swing (making me think we need one like that). It's a big, rectangle bolster-like swing and she did all kinds on interesting things with Reagan on it. At the end of the session we discussed equipment a little. She thinks Reagan would benefit from a Rifton Special Needs Tricycle. It's hard for me to imagine Reagan on something like a tricycle, but I guess there's a lot of support and it would be good to get her legs moving like that. We're going to try it out with her next week. We also talked about walkers and standers...which she's really going to need once we do the botox/serial casting again on her feet (which will be happening over the next two weeks). So, the first half of the day went off without a hitch. Then tonight she started getting irritable. I broke out the bottle and plugged her up. She drank a 4oz bottle of formula and then 3oz of prune juice but she just wasn't settling down. Her head felt a little warm so I broke out the Tylenol and as I was trying to get it down her I heard the tell tale sounds of rejection. She threw it up! She threw EVERYTHING up. Poor baby. I sure hope she's not getting sick. I'm thinking it was a combination of her having an extremely full tummy and the fact that she's been known to throw up grape Tylenol in the past (but I was hoping she was over that). Since she didn't get any of the Tylenol down and then I couldn't really give her anything to drink to soothe her...she was miserable. I handed her off to Mike and rushed to the pharmacy to get some Feverall (the rectal equivalent to Tylenol). Our usual pharmacy was out of it, so I sped down the road to another 24hr pharmacy and they were out too! Then I went to a nearby grocery store...out. Finally I looked up pharmacies on my GPS and started calling until I found one that was open and had Feverall in stock. It was about 12miles away, so I booked it down to that pharmacy and picked up two boxes. An hour later, I got home and Reagan was already alseep in bed. Ugh. Mike did say that about two minutes after I left, she cheered right up and was smiling and babbling. Go figure. Please keep her in your prayers. We do NOT need anything else to deal with right now. Seizures are still yuck. I never heard back from her neurologist today. She's doing a lot of twitching (specifically her elbow) while she's sleeping. No wonder she's having a hard time sleeping. Lots of prayers needed for this little one.

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About Me

On August 21, 2007 (at exactly 5 months old), Reagan had her first cluster of seizures. She was diagnosed at 6 months old with Infantile Spasms and 2 years later with Mitochondrial Disease. Life has been a roller coaster for us and our baby girl but we've been blessed with wonderful friends and family to help us though this!